A Caregiver’s Guide: Creating Joy and Meaning for Those with Dementia

Ronda Parsons, author of: “Creating Joy & Meaning for the Dementia Patient, A Caregiver’s Guide to Connection and Hope,” speaks with Alzheimers.net about caregiving and shares the guide with Alzheimer’s caregivers today. Learn more.A Caregiver's Guide: Creating Joy and Meaning for Those with Dementia

A Caregiver’s Guide

Caregiving is not for sissies. No experience in your life can prepare you for the daily challenges you face when caring for a dementia patient. It is physically draining, heartbreakingly sad, and stretches your patience to limits you never thought you possessed. It rearranges the tiny molecules that hold a family together. It reassigns the roles that we have played for a lifetime; mother becomes daughter, daughter becomes mother. It is like watching someone slip into a dream while they are still awake.

I know this to be true because I spent ten years caring for my mother-in-law, Nan, as she spiraled down through the stages of this devastating illness. I know what it means to care for someone with dementia day-in and day-out for many years. I know that it is a demanding reality that can bring the most loving caregiver to their emotional breaking point. Dementia doesn’t just affect the sufferer, but reaches its tentacles into the lives that orbit around the patient, often leaving them exhausted and defeated.

Initially when I began caring for Nan I was in a defensive mode, solving problems as they were thrown at me. I’d lie awake at night attempting to fix unfixable problems, searching for answers when none existed. I made lists, attacked daily problems with vigor, all the while feeling taxed and frustrated. And the sad truth was that despite my efforts, Nan continued to spiral further and further into oblivion. Neither of us was making progress. My initial plan wasn’t working.

Creating Joy and Meaning for Those with DementiaCreating Joy and Meaning for the Dementia Patient

Through observation I had come to realize that Nan no longer lived in a world made up of days or even hours, but instead she lived inside spontaneous flashes of reality. In other words, she was living her life from moment to moment. As quickly as recognition arrived, it was gone again. I knew instinctively that although her understanding was temporary, these moments were not unimportant.

So I set about creating activities that would bridge the gap between the outside world and her awareness by focusing on instincts universal to us all — the beauty of nature, our six senses, the power of music, the love of family, and the balm of laughter. We sat outdoors, touched flowers and fed birds. We leafed through a clearly labeled family album I made for her. We sang hymns and listened to her favorite music. Occasionally we even danced together. (Yes, I found that a wheelchair can easily roll to jitterbug music.) We ate her favorite foods, painted her fingernails and scented her room. We prayed and talked about the many blessings in our lives. I constantly reminded her that she was a good and wonderful person who had led a splendid life. And as the disease progressed, we watched cartoons and took turns holding her dolly. Each day I tried to create little surprises that would ignite even the briefest moment of spontaneous happiness.

Soon I discovered that no happiness was too small or its effect too insignificant to affect positive change. For when she was content and at peace, the old Nan from long ago would suddenly appear out of nowhere in the guise of a familiar comment or facial expression. These moments became the encouragement that I needed to work harder to build a bridge of connection between us. Those moments reminded me of the woman I missed so terribly and proved to me that she was still in there, lost in dementia’s thick fog. I made it my mission to harness these moments and utilize their power in order to bring joy and meaning into her life.

Granted I wasn’t always successful. But slowly my small achievements began to build and it wasn’t long before our connection grew. I found that as my attitude relaxed and calmed, so did Nan’s. I learned that as a caregiver, I possessed the power to alter the tempo and undercurrent of our relationship. I could choose to inject hope and understanding into this heartbreaking situation. And since then, somehow amid all the confusion, we have been able to share surprising moments of unexpected joy and love.

Little did I know at the time, but experts in the field of dementia were in agreement with my approach to Nan’s care. The plan that I developed naturally through intuition is in fact in alignment with methods that are being implemented in both the United States and Europe. This knowledge gives me hope — hope that families will begin to celebrate what a dementia patient can bring to their lives, rather than see them as an inconvenience to be relegated to the sidelines. It gives me hope that others are also embracing the concept that under certain circumstances, it is best to focus on the quality of our days, rather than the quantity.

Mostly, it validates that my approach increases the likelihood that I am bringing joy and meaning into Nan’s life.

What caregiving approaches have you used to create joy and meaning for those with dementia? Share your tips with us in the comments below.

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Please leave your thoughts and comments

  • JCM

    One of the best stories that I have seen about caring for a senior regardless of the depth of their dementia. I remember when I first started to care for my Dad that I thought I could “fix” him but soon found that he had a lot to teach me.

    • Christine

      Interesting. What do you mean by that? I’m curious what did you learn along the way? Tell me more please 🙂

      • Eleni Andreou

        I’m not sure what JCM means by “fix”, however I, too, thought I could “fix” my dad too. By “fix” I was just not
        accepting the “Dementia Demon/Alzhiemer’s Monster” that was starting to
        surface. I tried to fight it and I tried to make my dad fight it and in the end I almost lost myself in that unbeatable battle. It was only when I decided to “work with” the Demon/Monster was I able to “accept” our loss and how much we were both about to lose as the Demon/Monster consumed a little more of my Dad each day it seemed. Each time my dad would resurface I would work with him giving him a pep talk on not being afraid, that he is not alone – we’re in this together and that I will always be there for him as well as that, whenever he would become confused (he had grabbed me by the throat one time but he said he couldn’t choke me because when he looked me in the eyes he just couldn’t do it – and they have a tremendous amount of strength with Dementia/Alzheimers. My dad was 75 at the time – three years ago). I repeatedly had this pep talk with him each time there was an episode of confusion along with a chat telling him that, as difficult and as scary I am sure it was, he needed to try just a little and to remember very very hard that when he heard the words “dad it’s me” that the only person who called him “dad” was me (I am an only child) and I am the only one in the world that would him no harm. “Dad” was our “safe” word. I thought this was all a shot in the dark but I had absolutely nothing to lose compared to what I WAS in the process of losing: My dad, my hero, my best friend. Many times I repeatedly reassured him of this many times and to my surprise, when he was still able to clearly communicate with me (now he can’t anymore but when he’s lost in confusion and I keep saying “dad it’s me” he shakes his head like coming out of a trance and manages to say “it’s you” and he calms down) he would describe his efforts to me. From then on I made sure I worked around the Demon/Monster in order to reach my dad, kept a routine schedule, remained calm and I learned the Demon/Monster’s language through my dad as the disease progressed. My dad taught me – through the Demon/MOnster- that love and instincts are the only thing the Dementia/Demon cannot consume. I think we both learned this. This is how we communicate today, through love and instincts and …. for this I am grateful. it’s the best life lesson one can ever learn and I think you have to experience it in order to understand it. People used to tell me eventually I would feel content with all my efforts to care for my dad, but all I felt was useless, helpless and sometimes suicidal being an only child and a caregiver to my dad. We lost my mom suddenly 12 years prior. Yet now, looking back and continuing on this journey I can say that this very tragic experience has been a very precious life lesson and a fulfilling experience. I don’t wish it on anyone but, there is light at the end of the tunnel when battling the Demon/Monster. There is another kind of “victory” in this battle.

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